History

Journal History

Monday, March 5, 2007 7:21 PM CST

Well we just got wonderful new's about Hailey. She went through all of her scan's this last week and we got most of the results back.

Her CT scan and the MIBG scan both came back with no signs of any cancer. Now we are waiting to see what her bone asporation come's back like. Last time it took a little longer to get results because at first they could not see anything but when they did some deeper looking they found only a little on one side.

Yeah we all are in tears and so greatful. We will find out our next steps when Dr Park calls us with the other results. And we pray to GOD that it is all clear for as long as possible or forever. Please pray for our little angel Hailey.

We also get to leave tomarrow to spend a few weeks home or so. Hailey is so excited she is doing great. And she also has gained about 1 pd 1/2 in the last week, hopefully she keeps it up with the eating.

Thank you for all of the prayers they do help.

Love,

Crystal and Family

Tuesday, January 9, 2007 2:17 PM CST

We got all of our scan results back and her CT scan is stable, bone asp. took a little long to get back then usual they had to do more test's and it's only showing on her left side with not very much in her bone marrow. Yesterday we got results from her Bone Scan and the spot's in her liver have gotten smaller but they are so small in the first place it is hard for the doctors to specifically tell us how much. So we got really good results. So we are starting chemo again as soon as her counts are up to handle her chemo. She has gained a pound in the last month which brings her weight to 44 pds.

On another note her christmas went good it was very over whelming with so many toys. She enjoyed it by the time we got done helping her with her presents and open our's I was to tired to help open Keauna's (hailey's baby sister), but we got it all done and headed to another house to open more. We had a low key Christmas and it was nice.

Tuesday, January 9, 2007 2:17 PM CST

Wednesday, December 13, 2006 2:14 PM CST

Well hailey just got her new scan's last week. This monday I had a meeting with Dr. Park and looked at her CT scan from when we first got rediagnosed to now and it is such a huge difference. From my point which of course I don't know what all spot's look like but it is more than a hundred % better in my opinion. Her Dr also said that the spot's that are still showing that they could be non living cell's, I really pray that's what it is. Dr Park is really suprised that she has been getting such good results on her disease. We couldn't ask for anything more. She also had an MIBG scan but there was a cord that was unhooked on it so it didn't read right for all of the children that got it that day. And her Bone Scan result's have not made it back.

So, the plan is to do a 3 week chemo which she has been doing since she has been back. And then rescan her MIBG and see how it looks if nothing is showing new disease then we will do the other round and scan after that. And discuss what to do next. Dr Park is just worried that her body might get immune to this chemo and stop working. So we are in a hard spot because the last time in her scan's all has been stable and her bone marrow keep's making good progress. So we will just have to see how everything goes, in her next round.

We are getting ready for christmas which we get to spend at home which will be great. Last night we road in hummer limo's to go look at lights and plan to go to the nutcracker on Sunday afternoon. So we are keeping Hailey very busy. She is in great spirit and ready to open all of her presents.

Merry Christmas from our family to yours.

Crystal (hailey's mom)

Sunday, October 22

Hailey just got her scan's back last week and all result's are good. The neuroblastoma in her liver is still stable but has in prove a lot since we have been on treatment. Her bonemarrow this time has gotten better it is now even more scattered then about 2 months ago with our last scan.

We had a meeting with Dr. Park on Friday October 20th we went over all of the option's that there is to choose from to start her next round. The meeting went as good as it could. I decided to keep going with the treatment she's been getting we have seen good result's in every scan so I feel we should keep on keeping until the is a reason for us to change.

She is doing good with all of her treatment's. She is full of life and love's to keep us all busy. Hailey is attending school at the Children's Hospital four time's a week. Which is good for her. Other than that we come home as much as possible to have time with family and friends.

Tuesday, March 30, 2004 4:28 PM CST

Well Hailey started preschool about a month ago, she loves it. She gets to spend time with her bestfriend Brooke now. Other than that she has been doing good.

She goes for scans the first week in April. She is so used to not going so I am not sure how well she is going to take it. But, it is for the best.

I put a new picture of her. Hope you like.

Wednesday, January 21, 2004 4:26 PM CST

Hailey is doing just great. We are just trying to get our lives back to normal as much as we can. She just finished all of her final scans about 3 weeks ago. We haven't heard all of the result because the snow caused us to miss our appointment in Seattle. But, on January 26 we will know. She has a lot of hair now and it came back in light brown and with a little bit of curl, its at the stage of "what do I do with it."

She had a wonderful christmas, you can just say Santa was good to her. We spent it with all of our family and friends, which was nice. We got a little bit of snow but she didn't get to play in it much, it was just so cold and we do not need to have her sick by any means.

Two weeks ago she started going to daycare again for four hours while I attend school. She loves playing with the other kids.

Wednesday, September 17, 2003 5:51 PM CDT

Hailey is doing great!! She just turned 3 on June 26th. We had a big party with lots of friends and family, a couple of clowns showed up too.
We are home now all of the time but we do have appointments in Seattle about every two weeks or so. Which is nice. She is on the last step of her treatment and only has about 3 more months of it. She has also gained a little weight and has grown a lot of "Brown" hair. We are very happy!!

Wednesday, June 11, 2003 10:40 PM CDT

Hi there! Well Hailey is doing pretty good and she's finally has hair. Well she has a NG tube so that we can start streaching her stomach out so that she will hopefully starting eating. I wish we would have started it a little bit sooner. But we are getting there. Well Monday she got a temp. so she had labs take to see if she had and infection. And we found out that she has a infection in her line. So she was admitted into the hospital on Tuesday night. Not only that but her lines decided that they were going to stop working so now tomarrow she is getting it pulled and they are putting a pick line in her arm. Hopefully this will work out for now. But other then all of this happening everything else is going pretty good we have been staying home most of the time and we just make trips up twice a week. Hailey's 3rd Birthday is coming up on the 26th and I am having a huge party for her she is so excited. She is hoping for a puppy and her grandma and grandpa are getting her one.

Friday, May 9, 2003 9:45am

Hailey finished her radiation and started the next step. But we found out that they messed up and she had to do her radation all over again. So now we are put back 2 1/2 weeks.
Now we are done with her second radiation treatment and starting all of her tests. She is doing good and it looks like she will be going home with in a month, if nothing else comes up. Everyone is looking forward to that day. We are going home for the weekend and having mothers day with some of our family.

Friday, March 7, 2003 1:11 PM CST

Hailey has finished the process of her stem cells on February 28th. The doctors are so amazed with her. She ended up getting out of the hospital I think about -15 days. Which is really early. Her counts are coming up but just taking a little longer than usual, but she is still running around having fun. She starts her radiation treatment on March 17th and it should last about 2 to 3 weeks. We are planning on bringing her home this next weekend so that she will have a brake from all of the stuff going on in Seattle. Thank you all for your prayers!

Crystal
(Hailey's mommy)

Saturday, February 8, 2003 4:05 AM CST

Yes, I know its been a long, long time since I have updated this site. Crystal reports that Hailey completed the final round of chemotherapy yesterday. She was sick at night but is doing great overall. She has been roaming the halls on a bike/horse telling everyone to get out of the way. She is set to begin the stem cell process on Monday the 10th. I will update when I know more.

Monday, January 06, 2003 at 01:17 AM (CST)

Yes, once again I've been very slow to update. Things have been a bit hectic. Hailey is doing very well. She did a lot of fun things over the holiday season. The week before Christmas Gary Payton of the Sonics paid a visit to the Ronald McDonald House. He and his wife took all the kids on a bus to FAO Schwarz (Toy store in Seattle) and let them each go on a mini shopping spree. They closed the store down for them. He also brought along a photographer to take pictures of him with the kids and then gave them the pictures. It was such a great and generous thing for him to do.
On Christmas Eve the Medina and Kirkland Police Departments put on an amazing 3 hour cruise for everyone. All the families from the RM House along with many guests took a cruise around Lake Washington and Lake Union. Our party alone had eleven people. Santa even showed up. Not only did they give the families tons of gifts, so many people spent their entire Christmas Eve away from their own families to be there. I can only imagine how much time was spent fundraising and preparing for this event. Thank You to everyone involved. For me it really showed what the true meaning of Christmas is all about. It was so neat to see all the kids happy and having a great time and able to get away from the confines of the hospital and RM House.
Hailey recently completed her 2nd to the last round of chemo. In approx. 2 weeks she will have the last round (which is the strongest) and then will have the stem cell transplant shortly after.
I hope everyone had a wonderful holiday season and wish you all a very Happy New Year.

Sunday, December 15, 2002 at 11:57 PM (CST)

Hailey is in the hospital recovering from surgery. She just amazes me that she rebounds so quickly. She did have a rough night on Friday and is fighting another infection in her line. There is a tube in her nose to get the fluid out of her stomach and she had an epidural (sp?)in her back for the pain. (which came out on its own) I cannot believe the surgeon had the audacity to insinuate that Crystal had taken it out. It's absolutely ridiculous to insinuate such a thing. (Okay enough of my venting) But, through all this Hailey is healing very well. She walked today for the first time since surgery. She wanted to walk all around. She played a lot in the playroom and even sang part of Jingle Bells while pressing the keys on the little piano. She sure has come along way with the procedural aspects of this treatment. When the ivy pole beeps she tells the nurses, she knows which buttons to press on the blood pressure machine, she holds the thermometer under her arm, and helps the nurses when they draw blood. I just can't brag about her enough. Not to mention she is such an adorable little girl. I know we are truly blessed to have her in our family!!!

Thursday, December 12, 2002 at 12:20 AM (CST)

Hailey continues to amaze all of us. We have a lot to be thankful for. Scans that were completed prior to surgery showed that the cancer cells in her head, back, and femur are all gone!!! There is one spot showing on her liver but there is a good chance that it is scar tissue. Also, the tumor had detached from surrounding organs. Hailey had surgery today to remove the tumor which lasted about 4 hours + time in the recovery room. The family reports that the surgery went really well. She is now in room 330 at Childrens Hospital and should be there for approx. 5 days. Now, she should be feeling well in time to celebrate Christmas. She will have the last round of chemo shortly thereafter. Then the next step will be the stem cell transplant. Please keep Hailey in your prayers because they are definitely being answered.

Sunday, December 01, 2002 at 10:44 PM (CST)

Okay, I have been a total slacker on updating. Hailey completed her 5th round of chemo. She will have tests done tomorrow morning to assist the surgeon. And, soon we should know the exact date of the surgery to remove the tumor. The tentative date is sometime between December 11-16th. Hailey's counts are now on the way down due to chemo but she seems to be doing really well. She has had a few bloody noses (due to low platelets)but that has not stopped her energy level. Today she was running all over the Ronald McDonald House. She has also been eating pretty well. The latest thing she like to do is brush her teeth. Crystal said she wants to do it all the time. I promise I will update more often!!

Tuesday, November 12, 2002 at 12:41 AM (CST)

Hailey was released back to the Ronald McDonald house last week. They have her on an antibiotic to get rid of the infection in her line. So, now Crystal and Gary must administer the antibiotic through her line at midnight and 6AM. And, she has not eaten for over a month so she is still receiving nutrition and lipids, which they must also give her through her Hickman line. She still has horrible sores in her mouth, throat, and on her lips. I can't even imagine how painful they must be. Her little lips are covered with scabs. Hailey is such an amazing little girl who is dealing with more than most of us will in a lifetime. She is just such a sweetheart. Even with all the stuff she is going through she still finds the energy to play. Today she put a diaper on her little doll and even attempted to put one on herself. She has been enjoying the movie ET and says that ET is cute.
Tomorrow she will be at the hospital for about 8 hours so they can run tests on her kidneys to ensure they are functioning properly. The 5th round of chemo is set for Wednesday assuming that her sores heal by then. The tenative date to remove the tumor is December 9th. I will update when I know more.

Tuesday, November 05, 2002 at 12:20 AM (CST)

Well, I am saddened to report that Hailey was not able to go trick or treating. Last Wednesday she developed an infection in her Hickman line which resulted in her being admitted back into the hospital into isolation. She has a fever and severe mouth sores on her lips, inside her mouth and throat. She is currently in room 332 at Childrens Hospital. Apparently, they have isolated the infection and with antibiotics her fever is coming down so she is now out of isolation. Please say a special prayer that she will overcome this hurdle quickly.
Thank You so much to everyone involved with the benefit concert and Toy Soldier Bazaar. You have all been so generous and thoughtful.
Also, say a prayer for Garrett Drew. He is a cute little guy who is currently in remission from Neuroblastoma and has his year check up this week. His website address is www.caringbridge.org/sc/garrettdrew

Monday, October 28, 2002 at 11:29 PM (CST)

Hailey completed her 4th round of chemo without problems. She was in a very small room at the hospital with 3 other kids, so Gary and Great Grandpa were very happy to get released to the Ronald McDonald House. Hailey's area of the room consisted of a bed and a chair with very little room to move around. You sure can tell Great Grandpa has been spending a lot of time with Hailey as he is now quoting lines from Monsters Inc. Hailey seems to be trucking right along with her treatment and we are very grateful for that.
She is going to be Snow White for Halloween. Carrie and Crystal chose an adorable costume from the Disney Store. I think Hailey likes it a lot also as she didn't want to take it off when she tried it in.

Tuesday, October 22, 2002 at 12:27 AM (CDT)

I have been slacking a bit on the updates so here goes. Hailey went home to Longview on Friday. She was scheduled to leave for home on Wednesday but due to the severity of her mouth sores she wasn't able to. She was very happy to be at home. Gary, Carrie, and Crystal had a nice BBQ at their home on Saturday with ALOT of family and friends. Hailey sure is loved by many people. This was the 1st weekend at home for Gary, Carrie, and Crystal(they have not had a weekend at home since this ordeal began) so it was extremely nice of them to open their home to everyone.
Hailey is back at Children's hospital in room 343. She has just one sore remaining on her tongue so should have started her 4th round of chemo this evening.
I will try to update more often.

Wednesday, October 16, 2002 at 12:29 AM (CDT)

Hello Everyone! Hailey is doing pretty good. While she still doesn't have her appetie back, she did drink some juice and attempted to eat although she spit it out pretty quickly. This is an improvement from ignoring food altogether. The Docs say as her counts go back up the sores in her mouth and throat should go away.
They harvested more stem cells on Saturday and Sunday and hopefully this time they have enough to purge. Hailey has some routine lab work tomorrow morning (Wednesday)and if all goes well they are letting her go home to Longview for 4 nights. This is so exciting. We can't wait for her to be in her own surrounding with her family, friends, and her dog Kona. Thanks for checking in on our sweetie pie. More new pics on the photo page.

Wednesday, October 09, 2002 at 01:04 AM (CDT)

So, here's another quick update. Hailey went to the hospital on Friday for routine lab work but due to a fever they decided to admit her. Her fever has been up and down, And, due to the fever and low counts she wasn't able to have more stem cells harvested on Monday. She is still in the hospital (room 343)and the tentative plan is to have the stem cell procedure done tomorrow (Wednesday). Hailey has been a bit cranky the last couple of days, which I'm sure is due to the combination of pretty bad sores in her mouth from chemo, little to no appetite (she had 2 drinks of milk today), and low counts. I would be cranky too. She is handling it much better than I would. The 4th round of chemo should begin on October 14th. We are hoping she is feeling well on the 18th so she can join the other kids from the Ronald McDonald House on a trip to the pumpkin patch. Crystal hasn't decided on a halloween costume for her yet but Carrie suggested Chip the tea cup for Hailey and Miss Pots SP? for Crystal. Hee Hee. I'm sure Crystal will really appreciate me sharing this.
Check out the new photos. I will update again soon.

Wednesday, October 02, 2002 at 12:59 AM (CDT)

It has been several days so I thought I better give a quick update. Hailey completed her 3rd round of chemo like a champ. She was released back to the Ronald McDonald House on Saturday and has only gotten sick a couple of times. She had a great weekend playing with her best friend Brookie and her new friend Katie (who also has Neuroblastoma). She was full of energy yesterday and greeted me with a running hug which of course melted my heart. It's so great to see her so playful. She has become very good at flushing and cleaning the lines on her teddy bear.(The hospital gave her a teddy bear with the same Hickman line that Hailey has in her chest)She also enjoys giving her bear shots and had fun giving her daddy some also.
Okay so on to some medical info. Apparently they harvested less stem cells than they initially thought so Hailey will return to Fred Hutchinson the beginning of the week so they can collect the amount needed to send them to the lab in Los Angeles. Her 4th round of chemo should begin in about 2 1/2 weeks.
Thanks to everyone who has signed Hailey's guestbook. It's uplifting to know so many people are checking in on her.

Tuesday, September 24, 2002 at 10:41 PM (CDT)

We had GREAT news today. Crystal, Great Grandma, and Great Grandpa met with Dr. Dallas to find out results from all the recent scans and tests. The cancer is responding well to chemotherapy. While there is no change in the cancer cells in Hailey's femur, back, and head, there is NO new cancer. Also, there is no cancer in her bone marrow. The tumor connected to the Adrenal Gland has shrunk even more and the cancer cells in the liver are smaller. So, overall the results were very encouraging.
Hailey was admitted back into the hospital today to begin her 3rd round of chemo. She is in room 330. This round of chemo will last 4 days and she should be released on Friday. Crystal also received more good news. There is a small chance that in the next couple of weeks Hailey might be able to go home for a weekend, which would be very good for her whole family to get a sense of normalcy, even if only for a short period of time. Also, Crystal's best friend Jennifer and her daughter Brooklynne (which is Hailey's best little buddy) will visit on Sunday. They are planning on taking the kids to the Seattle Aquarium. Hailey will be so excited to see her little friend.
Please continue to keep Hailey in your prayers. She is such a strong little girl and she is definitely going to beat this.

Saturday, September 21, 2002 at 12:44 AM (CDT)

Hello everyone!
I wasn't able to visit Hailey on Thursday due to my fear that I was coming down with a cough and of course couldn't risk passing anything on to Hailey. Crystal reports that Thursday and Friday went much smoother than Wednesday. They used a different sedative which Hailey responded to a lot better. Thursday's biopsy was a fairly short procedure lasting about 20-30 minutes. Once finished Hailey returned to the Ronald McDonald house to sleep off the sedative. Today (Friday) she had an MIBG and an EKG. Crystal said she is feeling pretty good today. I spoke with Hailey and she said her cute little "Hello" and then told me "No more medicine", which has become a common saying for her these days. The third round of chemo will not begin until Tuesday so she has the next few days to rest and not be subjected to anymore tests or scans. Crystal will speak with the Dr's on Tuesday to get the results from all the recent testing.
Oh- and to update on the stem cells. They were able to collect enough stem cells on Monday which meant not having to go to Fred Hutchinson 2 days in a row.
So, that's all I know for now but will keep everyone posted.

Thursday, September 19, 2002 at 01:39 AM (CDT)

Today was a not so good day. Okay, I won't sugar coat things. It was a bad day. What should have been a fairly routine day didn't go as planned. Hailey was scheduled for a CAT scan.(which she handles pretty well) Bear with me if I get some of the testing terms wrong as I wasn't there during the early part of the day when the Dr's were explaining things. They decided to do a bone scan which required Hailey to be sedated. The CAT scan went fine with no problems. However, Hailey did not do well with the sedative. After giving her the highest dosage possible she woke up before the scan was completed. Crystal had to hold her down to complete the scan. Once finished Hailey was very upset. It was difficult to calm her down. They Dr.'s say this is not unusual but I know Crystal is very stressed out from the whole ordeal.(But of course Crystal handled things like a pro) Hailey began crying, kicking, and hitting upon waking after sedation. After quite some time Crystal was able to lay down with her and get her to sleep. She was still asleep when I left around 9:30 PM. She seemed exhausted and didn't even wake up when Crystal hooked her back up to her IV. Great Grandma and Great Grandpa are there to help out also.
There are also a couple more unexpected tests scheduled for the next few days. She will be sedated for both. Tomorrow (Thursday) she will have a bone biopsy or aspiration? Then on Friday they will complete some tests on her kidneys. I think the test on her kidneys is necessary because she begins her 3rd round of chemo on Monday which is different from the first two. This particular round has the potential to cause kidney damage and some hearing loss. However, Hailey is a little fighter with a lot of people praying for her and I'm sure she will come through this round like a champ.
That's it for now. I will update again soon and hopefully we will have the results from the CAT scan tomorrow.

Sunday, September 15, 2002 at 02:26 AM (CDT)

Today was a good day! Grandma, Grandpa, and Mommy are all staying with Hailey at the Ronald McDonald House. Hailey had many visitors today including Great Grandma, Aunt Debbie, Uncle Gary, Aunt Carol, Uncle John, Nana, Aunt Wanie, and myself.(Cousin Jen)
We played with new Play-doh that Aunt Wanie brought Hailey. (I think Aunt Wanie would like some Play-doh for herself. Ha Ha)Most of us (excluding Gary) are limited to making snakes and balls, so Wanie's little creatures were a lot more exciting.
Hailey also visited her favorite Nurse Christina at the hospital to give her a blown up picture Daddy took of Christina making a monkey face against the window. The picture was taken after the room full of people were all imitating gestures from the Wiggles video. (Including Mash Potato Mash Potato, Spaghetti, Monkeys, and Elephants) Hailey is not lacking for animated people in her life.
Her appetite is not back in full force since the second chemo, but that is pretty typical. Plans are still set for the stem cells to be harvested on Monday and Tuesday.
We want to thank everyone for your thoughtfulness and generosity!!! You are all very appreciated. The car wash put on by the owner and parents associated with New Beginnings Child Care was quite a success.
There is an upcoming benefit concert for Hailey on September 21st @ 7PM at the Kelso-Longview Adventist Church on West Side Highway in Lexington. An inspirational singer, Clarissa Worley and violinist Matt Mandrones along with an acoustic ensemble will perform. For information call (360)423-7344 or (360)423-2072.

Wednesday, September 11, 2002 at 11:38 PM (CDT)

Neuroblastoma is a cancer of the sympathetic nervous system. It is a solid tumor cancer that begins in the nerve tissue, in the neck,chest, or pelvis but usually originates in the abdomen in the tissue of the adrenal gland. In Hailey's case the tumor is attached to the adrenal gland.
Upon diagnosis the tumor was the size of a softball. After the first round of chemotherapy, scans show the tumor has shrunk approx. 50%. The first round of chemotherapy was very rough. She required blood transfusions, oxygen, and a feeding tube in her nose. (which she hated and pulled out on several occasions) Crystal slept with one eye open and some nights didn't sleep at all to prevent Hailey from pulling it out. Hailey also had a central line put in her chest to allow them to give her chemo, meds, and nutrition without having to stick her with a needle each time.
She recently completed her second round of chemo and is set to have stem cells harvested on Sept. 16th and 17th. The stem cells will be sent to California, purged of cancer cells, and later transplanted back into Hailey. After the 5th round of chemo she will have surgery to remove the tumor. She will then have more chemo, radiation, and accutane. She cannot be more than 60 minutes away from Children's Hospital in Seattle for approx. 9 months so she will either be in the hospital or at the Ronald McDonald House during that time.
The second round of chemo was a lot better. After spending over one month in the hospital (some of which she spent in isolation) she was released to the Ronald McDonald House. She does have 1 IV which Crystal or whichever family member is staying with her must flush and change. Crystal is going to be known as Crystal MD when all this is over. She even has to give her a shot everyday.
Hailey is such a little trooper with a sweet and funny personality. She went to the zoo yesterday and loved the baby baboon and baby elephant. She is walking again and even dances to her "Dance" video which she watched countless times while in the hospital. She went to the park today and played on the swings and slide. She was very cute chasing a squirrel around the park.
Please keep Hailey in your prayers.

Monday, September 09, 2002 at 12:10 AM (CDT)

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